Freelance writer. Regular contributor to the Guardian. Lover of open water swimming. And of Greece. Likes pools that aren't kidney-shaped and far horizons

Joined February 2011
46 Photos and videos
Pinned Tweet
8 Apr 2023
Replying to @PFMDwithPatient
7 Apr 2023
Replying to @KerenLL
At time Invariably wrong symptoms Invariably wrong nature of symptoms Invariably wrong location of symptoms Invariably wrong order Invariably wrong priorities Invariably wrong urgency Invariably wrong department
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I think it possible the most valuable thing to a patient is the knowledge that they can entrust their symptoms to a clinician and be heard Not 'feel' heard. Be heard
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It can be so important in the context of Long Covid and of systemic disease not to exaggerate The sobering thing is Long Covid and systemic disease can make exaggeration completely unnecessary
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I don't know why I said 'can be' here I meant it 'is' so important
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And the 'if we don't recognise all aspects of X then X is not happening/doesn't exist' can become close to terrifying Hideous double whammy for patients in the gap before they can 'prove' / prove 'sufficiently' and via accepted measures what they have already described
Replying to @ABrokenBattery
As just patient have noticed that eg the 'if we can't cure/treat X don't name X' line of thinking can be a big divide between clinicians and patients Obviously not all clinicians But a divide nevertheless
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I don't imagine that's a huge draw for under 16s but true anyway
Replying to @keetmuise
Certainly true that @MedTwitter assembles eg resources, clinicians, clinicians in different disciplines, researchers, patients, nationally and internationally to an extent that doesn't happen that often / quickly elsewhere There are 'real' clinicians on here, too
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'Multi Disciplinary Twitter' By time this degree of MDT happens 'in real life' patient can be in real trouble
Replying to @keetmuise
Certainly true that @MedTwitter assembles eg resources, clinicians, clinicians in different disciplines, researchers, patients, nationally and internationally to an extent that doesn't happen that often / quickly elsewhere There are 'real' clinicians on here, too
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Neither patients nor clinicians should come to be collateral to medical environment that has learned to be defensive What is wrong with the fact actual 'best interests' of the patient and the best interests of the clinician are not always and automatically the same? Everything
Then there is the fact that consent can be 'informed' in two directions Somewhere along the line it can seem to be forgotten/ignored that eg the pain, the normal for, the not normal for, the symptoms are the patient's We have to sign 14 forms saying 'we' have understood
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Then there is the fact that consent can be 'informed' in two directions Somewhere along the line it can seem to be forgotten/ignored that eg the pain, the normal for, the not normal for, the symptoms are the patient's We have to sign 14 forms saying 'we' have understood
Equally and additionally, there can be eg the failure to recognise what can be the immense value of a genuine apology Not ‘lessons will be learned’ which is a meaningless and unowned statement
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Equally and additionally, there can be eg the failure to recognise what can be the immense value of a genuine apology Not ‘lessons will be learned’ which is a meaningless and unowned statement
Personally I think aspects of The System, in both sectors, can have a detrimental effect on this also ‘I ticked all the boxes but didn’t listen to what patient described or why’ sort of idea
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I speak from horrific experience in saying that in scenarios in which everyone in chain refers or investigates/‘treats’ what are definitely not the symptoms or nature of pain the net result is worse than nothing Because it looks like activity
Thank you Think it’s a point made ‘much’ less often than those about eg the risks of ‘Over diagnosis’ and ‘over investigation’ And it’s as important
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I am hard to offend But the fact any literature by clinicians should emerge referencing ‘labels’ in this way takes disparagement to new levels As well as missing ‘so’ many more nuanced points
Misdiagnoses can give patients a 'label' too Why is 'label' assumed always to come from or be sought by patients? Why is 'label' as a term used by any clinician in anything other than literal sense? Surely it should be used only eg in reference to the one on a blood test
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And have said it so many times but can never overstate that these appts were the very very last place on earth wanted to be at time Wild horses could not have dragged me there without the necessity to be
Patients are first to be blamed would say My ‘unrealistic expectation’ was to be believed And definitely about what usual for me, what really wasn’t and why this mattered ‘Demand’ is too easy I don’t go to dentists or any clinician for fun of it. Consent ‘informed’ 2 ways
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As said at time the urgency of the way symptoms were actually worsening was completely different from making the pain the urgency It didn’t require another explanation of how referred pain works I was not taken seriously
And as far as prescriptions go it was clinicians who were keen on eg pain suppressant medication To be ‘treated’ as if the pain itself were the issue when it was not was horrifying Really really horrifying
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We have to sign 14 forms to demonstrate we have understood what clinician saying Where is the form for patient to say - I understood that 1st time but those are not my symptoms, that is not nature of pain, this is not usual for me, this is
Patients are first to be blamed would say My ‘unrealistic expectation’ was to be believed And definitely about what usual for me, what really wasn’t and why this mattered ‘Demand’ is too easy I don’t go to dentists or any clinician for fun of it. Consent ‘informed’ 2 ways
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And as far as prescriptions go it was clinicians who were keen on eg pain suppressant medication To be ‘treated’ as if the pain itself were the issue when it was not was horrifying Really really horrifying
Patients are first to be blamed would say My ‘unrealistic expectation’ was to be believed And definitely about what usual for me, what really wasn’t and why this mattered ‘Demand’ is too easy I don’t go to dentists or any clinician for fun of it. Consent ‘informed’ 2 ways
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It was a merry go round of inaction I will never forget it
It was these or nothing I went in the desperate hope someone would listen to what I was actually describing, and why I was so alarmed by it
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As always, in these respects, applies to both sectors
In defensive medical environment, let alone one in which patients can be referred to depts for what are definitely not the symptoms excessive ‘diagnostic’ testing can relieve every clinician in chain from necessity to take any action Can The System contribute to this? Oh yes
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Misdiagnoses can give patients a 'label' too Why is 'label' assumed always to come from or be sought by patients? Why is 'label' as a term used by any clinician in anything other than literal sense? Surely it should be used only eg in reference to the one on a blood test
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I feel similarly about eg 'expert patient' Again, the intention is probably good But it can't help but shine light on way all other patients seen Should not make or be News for a patient to be able to describe eg symptoms in their own body or what usual for them and what isn't
I think 'sides' can be the whole issue Am absolutely pro Clinicians and Patients working 'together' They have different knowledge. They have different expertise A patient can be pretty well placed to clarify eg 'No, the pain is not at all like what you are describing'
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It’s relatively difficult even to make the point without being silenced by ‘the NHS is on its knees’
Replying to @LucyGoBag
I am always interested in those challenges and issues to The System which can be exactly the same or very similar in NHS and Private care These, including the fact, can come to get the least focus
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I mean is it worth it?
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